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Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.
Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!
This is a rebroadcast of Ep. 41 from Season 3.
Links:
Listen to Ep. 42: Friendship and Inclusion for Our Children and Ourselves w/ Effie Parks, the episode released right after this one.
See photos of Effie + fam: https://therarelifepodcast.com/
Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast
Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me on Instagram: https://www.instagram.com/the_rare_life/
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
By Madeline Cheney5
147147 ratings
Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.
Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!
This is a rebroadcast of Ep. 41 from Season 3.
Links:
Listen to Ep. 42: Friendship and Inclusion for Our Children and Ourselves w/ Effie Parks, the episode released right after this one.
See photos of Effie + fam: https://therarelifepodcast.com/
Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast
Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me on Instagram: https://www.instagram.com/the_rare_life/
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.

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